Researchers' experiences of patient & public involvement

Learning from experience of involving patients and the public

In ‘training for involvement’ researchers discussed their training needs and preferences. Alongside formal training, researchers discussed the importance of informal learning by experience. This included both their own learning by doing involvement (including learning from mistakes) but also what they could learn from observing or talking to their peers who had more experience. Several people described how their understanding and attitude had evolved over the years. Valerie said, ‘I feel like I’ve grown from someone who wouldn’t even know what PPI was’, to someone who now makes it ‘pretty much the first step of everything you do’. Vanessa noted that this was a continuous process: ‘we don’t have all the answers and we’re learning as we go.’ Suzanne said, ‘It just doesn’t feel real until you’ve done it.’
Researchers described a wide range of things they had learnt over time, from basic practical knowledge around organising catering, payments or arranging access to meetings; to the need for flexible and creative thinking about how to involve people; and understanding at first-hand the value involvement could bring to their research.
As Chris and Jen noted, learning from mistakes and working out what does not work can be as valuable as positive experiences. Some researchers also talked about learning there were limits to what they could expect from involvement.
Although there was considerable support for ‘learning by doing’, there were also many comments about the importance of learning by talking to other researchers and observing the involvement practices of more experienced colleagues. Being in a supportive environment was also felt to be important. Sabi suggested what was needed was more a community of practice than formal training, and Suzanne commented that ‘You’ve got to give people the experience of applying it and seeing how it feels, but also there’s got to be a system and structure to support that’. (See also ‘Organisational support and leadership for patient and public involvement’).
Some of the researchers we talked to were now using their own experience to teach or advise others, and many recommended attending NIHR INVOLVE conferences as a way of finding out more; as Valerie said, ‘What's great about the PPI conference and INVOLVE is that you can all learn from everybody else's “learnings on the job”.’

As well as learning from their colleagues, Vanessa and Rebecca were among those who talked about how much they had also learnt from the people they were involving.
See also ‘Messages to researchers/colleagues about patient and public involvement’, ‘Training needs for involvement’.


Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site. We are a small team but will try to reply as quickly as possible.

Please note that we are unable to accept article submissions or offer medical advice. If you are affected by any of the issues covered on this website and need to talk to someone in confidence, please contact The Samaritans or your Doctor.

Make a Donation to

Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email